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Everything posted by TinyTreasures

  1. Have you done or would you do the Cunningham Panel? Anyone get a normal/non-PANDAS result? My husband and I just decided we should get it done to rule PANDAS in our out for our 3.5 year old, but I am really scared of a false negative result. If you did decide to do the Cunningham Panel and got a normal result would you rule PANDAS out?
  2. So I am bummed - our appt with Dr. Alarcio was supposed to be this Monday, but I was just reminded that it was rescheduled for July 15th since she is recovering from surgery. I just forgot to erase the first appointment in my calendar. I was planning on doing the Mycoplasma, MTHFR, and Lyme bloodwork Monday and also asking Dr. A about my 3.5 year old's sudden onset of STUTTERING which is getting worse and worse. Tonight it took him like 10 tries to get the word "Mommy" out, and this is a child who was saying 250 words by 16 months! What in the world is happening? Also, there are times througho
  3. Once again thank you all for your posts! Yes it has been a super hard struggle with my DH not believing a virus could cause mental symptoms. He would always smirk when I mentioned PANDAS and I even felt I was literally going crazy myself and maybe it was all in my head on so many occasions. It was finally just after this last improvement and then relapse that my husband FINALLY acknowledged it wasn't poor parenting or just the "terrible 3's" but something our son could not control. I am cautiously optimistic that the Augmentin is our key for now. Our little guy seems mostly back to normal stil
  4. ps - my precious little boy was off the walls happy last night until right before he fell asleep, he started calling himself "Stupid" again. This morning he was in his bad mood again but trying to get out of it. He wanted me to do something funny that he always cracks up about in the past and I was doing it, and he was getting so frustrated because he couldn't laugh about it and even said "It won't let me laugh". Fortunately a little later on he became much happier again. He has had a lot of mornings the past 19 days that are really bad, and then by lunchtime he is back to happy again and even
  5. Hello - thank you all SO much. I have been so overwhelmed for the past 7 months with basically no one to talk to about this that it is a relief to finally hear from so many people who are so knowledgeable - I appreciate this very much so thank you! We see Dr A for our first followup visit in 13 days. We are definitely considering the Cunningham Test but does anyone know how accurate it is? My fear is getting a false negative - my husband has a hard time believing PANDAS even exists (just finally starting thinking that may be it this past week) so a false negative would be horrible.
  6. peglem - yes I would like to join both groups! Thank you for the advice on the bloodwork. I think I'll get the copies from her office at our appointment this month. Glad to hear from someone else in AZ! At the beginning of all this I thought it was a parasite, but we did a bunch of stool tests and they all came back negative. I put him on VitaKlenz for 30 days but it didn't seem to do anything. I am going to do the 23andMe test for sure. We did 2 weeks of Azithromycin at the very beginning of this 70+ day of antibiotic treatment...it didn't seem to work - we had 4 good days on it and 10 bad
  7. THANK YOU all so much for your posts, I am taking them all in and taking notes and reading the links. In my heart I know this must be PANDAS or PANS but sometimes I wonder if that triggered some other sort of mental thing. His change back in October was so severe and sudden. Now today (as each week varies) compared to back then he is actually WAAAY better - not nearly as much OCD, not as many rages or fears, no screaming nightmares, not as many tics, we can go places now without him clinging to me terrified except instead of being scared to death of other kids he is now in "fight mode" where h
  8. My precious 3.5 year old son has been tormented for nearly a year now. A year ago he suddenly developed a tic - "picking" after an illness - he had 20+ scratches all over his face for over 2 weeks, and his personality changed 100% - rages, extreme irritability, no longer would go potty or take baths, etc. After 3 weeks and lots of allergy medication from his Dr which didn't work, I put him on Probiotics 5x a day and he improved instantly. 5 months later he got sick with a cold and he started having several tics and his mood changed once again so that he was unrecognizable as the same child. M
  9. My son is 3.5 years old has had maybe 4-5 PANS relapses and as many remissions. What are remission and relapses like for your child? It seems like ours are almost instantaenous - like a light switch being flipped. For instance one time when a relapse had been going on for weeks he was raging over his bath toys getting wet - he wanted to play with them in the bath but dry each one off after it got wet. Literally 20 minutes later he was noticeably different, and the next night (and from then on) he had no problem with his toys getting wet. That is just an example of so many scenarios - he will g
  10. Anyone experience this when your child has a flare up - my 3.5 year old actually BECOMES (and believes he is) someone else, always someone "naughty". He literally is not like himself anymore, and if you call him by his name he screams at you that he is not (his name) he is _____ - in the past it has been Captain Hook, a Pirate, a naughty Robot, and now The Naughty Guy. When you say "Oh you are pretending to be "The Naughty Guy" he screams that he is not pretending, he IS the naughty guy. This naughty guy my son becomes is aggressive, does not listen whatsoever, and is absolutely horrible to ot
  11. My 3.5 year old was just diagnosed with PANS & is on week 3 of antibiotics. Life is good finally - my sweet boy is mostly back to himself & I hope I never lose him again! He had all his vaccines up until 2 years old (for some reason I just had a bad feeling about getting his last doses of vaccines & kept putting it off). We spaced them all out & he never got the MMR or flu or Chickenpox vaccines & I don't want to give him any more ever. I can't see it making sense to purposefully put diseases in the small body of someone with an autoimmune disorder who can't even fight off
  12. Yes, the cream is called EMLA! My 3.5 year old had to have blood drawn 4 times over the past several months. The first 2 times he just sat there happily and ate a candy bar - the cream works wonders.The 3rd time the nurse said "just a little poke" which freaked him out a little even though he couldn't feel anything, but he still did great. But the next day we had to come back for the last draw (a lot of tests and they couldn't take all the blood in the same day) and he was VERY upset because he remembered what the lady had said about him getting a poke. We had sat 1.5 hours in the waiting room
  13. Thank you for your reply Dedee - I appreciate it and it means so much to me! Yes I guess you are right - I am forunate to have caught it quickly...I usually read about people with kids diagnosed later but saw signs in retrospect of things happening years before. Thanks to the internet and also probably because my 3 year old's symptoms are so extreme - not just some sudden eye blinking that came and went. Picking (20+ scratches all over his face) was the first OCD along with the complete change in behavior. Then 6 months ago basically overnight his personality completely changed again and h
  14. My precious sweet little boy is almost 3 1/2 and just officially diagnosed less than 3 weeks ago with PANDAS or PANS. Waiting on bloodwork results. His first episode when he was 2 1/2 resolved immediately with Probiotics 5x a day for many days. I thought it might be a parasite because he was scratching his face so much (now we know it was OCD "picking"). He had a couple more episodes after coming down with colds which Probiotics barely helped, but his pediatrician wouldn't prescribe abx until his 4th episode - a major flu virus. Augmentin cured him 90% within a week and he was good up until hi
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